Bill 17 - Gender Affirming Health Care Advisory Committee Act, 2021
Submitted November 25, 2021
Introduction
In the past decade, throughout the West, two worrying trends have appeared in the world of gender medicine. The first is a dramatic increase in the number of minors being referred to gender clinics, and the second is a notable increase in the number of young people detransitioning after pursuing medical transition[1]. Initial data indicate that natal females are greatly impacted by both these trends, and it is therefore on behalf of Ontario’s girls and young women that we submit this brief[2].
Our three main areas of concern are:
1. The emphasis on the gender-affirming model of care, which is coming under increased scrutiny throughout the world.
2. The intention to adopt the Informed Consent Model of care, which falls far short of current guidelines in jurisdictions which have recently reviewed and updated the practice.
3. The lack of diversity of opinion and experience in the proposed committee.
Is gender-affirming care beneficial?
There is an ongoing debate in the field of gender medicine regarding what is the best model of care for treating children and adolescents who suffer from gender dysphoria. In the past, therapists treating gender dysphoric children practiced watchful waiting – a therapeutic approach in which the child received on-going psychotherapeutic support while the causes of his or her gender dysphoria were investigated, with the aim of alleviating it without the need for medical intervention. This approach was highly successful – studies show desistance rates of up to 98%.[i] However, in recent years, watchful waiting has been replaced by the gender-affirming care approach, which requires that clinicians do not question the child’s transgender identity, but instead affirm them and support them in their desire to medically transition. Rather than focusing on psychotherapy to avert the need for medical transition, affirmative care prioritizes medical intervention in the form of puberty blockers and cross-sex hormones as the first line of treatment. We believe this approach is harmful for all children and adolescents, but particularly so for the cohort of teenage girls who may be experiencing a new, atypical form of late-onset gender dysphoria.
This new atypical late-onset gender dysphoria often begins suddenly at puberty in individuals who experienced no obvious discomfort with their natal sex throughout childhood. Little is yet known about its causes, but clinicians have observed that this new cohort is unlike those previously recorded in medical literature.[ii] The group appears to be made up of predominantly natal females, whereas in the past childhood gender dysphoria afflicted predominantly natal males.[iii] A Finnish study found that a majority of these girls have one or more psychiatric comorbidity, such as depression, anxiety, eating disorders, ADHD, or a history of self-harm[iv], and evidence for a link between this possible new developmental pathway to gender dysphoria and autism is also growing[v] [vi].
In sum, there is a group of individuals with very complex psychological needs who are presenting to gender clinics, and we know very little about their developmental course. We believe that the unconditional affirmation of this group without a thorough investigation into the patient’s history risks exposing these girls and young women to unnecessary and irreversible medical intervention.
International guidelines are evolving
In light of so many unknowns related to gender dysphoria in children, many countries are adopting a much more cautious approach to the treatment of children with gender dysphoria.
In 2020, Finland became the first country in the world to issue new guidelines for this group of patients after a review concluded that there is a lack of quality evidence to support the use of hormonal interventions in adolescents with gender dysphoria[vii]. The new guidance prioritizes psychological therapy over treatment with hormones or surgery and suggests different care plans for early-onset vs late-onset childhood gender dysphoria.
Earlier this year, Sweden also published a new guideline for the diagnosis of gender dysphoria in minors, now emphasizing the requirement for a thorough mental health evaluation. Since publication, five out of Sweden’s six paediatric gender clinics have halted the practice of prescribing puberty blockers and cross-sex hormones for minors under age 16[viii]. The Karolinska Hospital justified its decision by citing research which showed:
“a lack of evidence for both the long-term consequences of the treatments, and the reasons for the large influx of patients in recent years. These treatments are potentially fraught with extensive and irreversible adverse consequences such as cardiovascular disease, osteoporosis, infertility, increased cancer risk, and thrombosis.” [ix]
There is an independent review currently underway in the United Kingdom with regards to its gender identity services for children and teenagers.[x] Initial findings by the National Institute for Care and Excellence (NICE) found evidence for the use of puberty blockers and cross-sex hormones in adolescents to be of very “low quality”. [xi]
We therefore find it deeply concerning that as other countries are reverting back to a more cautious psychotherapeutic approach, this bill actively seeks to promote gender-affirming care, despite a lack of evidence of its effectiveness and increasing signs that it may be harmful to children and adolescents.
The Informed Consent Model
Our next concern regarding the bill is this entry on the list of proposed committee functions:
7. How to adopt the informed consent model of transgender care and how to reduce referral requirements for access to care
It is important to understand what the Informed Consent Model really is. Informed consent in the general medical setting means the process in which a healthcare provider educates a patient about the risks, benefits, and alternatives of a given procedure or intervention. In the field of gender medicine, however, it means something very different. The Informed Consent Model in this respect is a form of gender-affirming care which removes the need for an official diagnosis of gender dysphoria by a mental health professional prior to starting medical transition. Proponents of this model of care argue that gender dysphoria is not a mental health issue, and that such a requirement is an unnecessary barrier to accessing care. We disagree. Gender dysphoria is a recognised mental health issue listed in the DSM-5, and a thorough psychological assessment prior to medical transition is a vital part of the treatment process, particularly for girls experiencing late-onset gender dysphoria, given the risk of coexisting mental health issues being present.
The Royal Australian and New Zealand College of Psychiatrists (RANZCP) recently issued a position statement stressing the importance of psychological assessment in the initial stages of transgender care[xii]:
“Comprehensive assessment is crucial. Assessment and treatment should be evidence-informed, fully explore the patient’s gender identity, the context in which this has arisen, other features of mental illness and a thorough assessment of personal and family history.”
It went on to recognize that:
“Gender Dysphoria is an emerging field of research and, at present, there is a paucity of evidence. Better evidence in relation to outcomes, especially for children and adolescents is required.”
As gender dysphoria is an extremely complex mental health issue, it is nothing short of reckless to seek to remove mental health professionals from the initial diagnostic stage. Diligent screening is extremely important given the irreversible nature of medical transition.
Under the proposed Informed Consent Model, “informed consent” means nothing more than a healthcare provider explaining the effects and risks of puberty blockers or cross-sex hormones and the individual signing to say they have understood and accept them. This is concerning not only because it excludes the alternative treatment option of psychotherapy from the decision-making process, but also because there are serious questions about whether a child or young adult has the mental capacity to consent to medical transition. It is often claimed that puberty blockers are fully reversible, and that they are nothing more than a pause to allow the child time to decide if transition is right for them; therefore, consent can easily be given. New evidence shows this to be untrue. Aside from the detrimental effects on bone density[xiii], studies also show that approximately 99% of children who start on puberty blockers go on to take cross-sex hormones[xiv][xv], so it is more accurate to view the blockers as the first step on a medical pathway which leads to hormones and major surgeries – that affirmation and starting the child on puberty blockers prevents desistance and makes cross-sex hormones almost a foregone conclusion. Therefore, in order to give true informed consent to puberty blockers, a girl must also understand the irreversible effects of the testosterone that will almost inevitably follow. These include sterility[xvi], vaginal and uterine atrophy which can later lead to sexual dysfunction and the need for a hysterectomy[xvii], and also permanent changes to the appearance in the form of excessive body hair growth, male-pattern balding, and a deepening of the voice. In Bell v Tavistock, the High Court of England and Wales acknowledged that “the child or young person would have to understand not simply the implications of taking [puberty blockers] but those of progressing to cross-sex hormones” and ruled that under-16s were therefore unlikely to be able to consent meaningfully to taking puberty blockers[xviii].[3]
We know that the area of the brain involved in long-term decision-making and risk assessment – the prefrontal cortex – doesn’t fully mature until around age 25[xix]. Therefore, we should not be allowing young people to make decisions that will drastically affect their futures before they have reached a level of maturity in which they are able to fully weigh the consequences. Many, arguably most, teenagers may claim that they never want to have children, and yet doctors do not perform vasectomies or tubal ligation on teenagers, or even young adults, because they understand that this feeling may change as the young person matures. We must treat gender dysphoric youth in the same way. We must not allow them to consent to sacrificing their fertility before they are capable of understanding what that really means.
The rising rates of detransition
The existence of detransitioners shatters the narrative that a person’s gender identity is innate and immutable, and their numbers appear to be rapidly growing. Proponents of gender-affirming care often suggest that the rates of transition regret are extremely low, sitting at approximately 1% or less. This number is based upon older studies done before the new cohort of late-onset gender dysphoria patients emerged. We therefore cannot assume that the detransition rate for one type of patient group (those with early childhood onset gender dysphoria) will apply to another (those with late-onset gender dysphoria).
While there is very little research done to date on this new phenomenon, this retrospective case-note review[xx] of discharged patients from a UK gender clinic shows a detransition rate of 6.9% -- far higher than previously thought -- and it is stated in the review that:
“as data collection occurred for only 16 months after the most recent discharge, we may have underestimated the frequency of detransitioning. There is some evidence that people detransition on average 4 or 8 years after completion of transition, with regret expressed after 10 years. Furthermore, as there is no automatic mechanism to inform GICs (Gender Identity Clinics) of service users who subsequently detransition, other instances may have been missed.”
To our knowledge, no such follow-up is done by Canadian gender clinics, and if that is the case, it is impossible for clinicians to know the outcome of the patients they treat, or the rate of detransition in Canada. Until more is known about this emerging group, erring on the side of caution is surely advisable.
Two recent studies investigating the reasons for detransition have been done and the results clearly support the need for extensive psychological intervention prior to starting transition.
In Littman (2021)[xxi], “the majority (56.7%) of participants felt that the evaluation they received by a doctor or mental health professional prior to transition was not adequate and 65.3% reported that their clinicians did not evaluate whether their desire to transition was secondary to trauma or a mental health condition”.
Two of the top reasons given for detransition were: “becoming more comfortable identifying as their natal sex (60.0%)” and “coming to the view that their gender dysphoria was caused by something specific such as trauma, abuse, or a mental health condition (38.0%)”. This supports the need for mental health professionals to take an active role in the care of gender dysphoric youth. It is also important to note that “44.4% of those attending a gender clinic specified that the gender clinic used the informed consent model of care” and “only 24.0% of respondents informed their clinicians that they had detransitioned.”
Another study of detransitioners published this year had similar findings[xxii]:
“The most common reported reason for detransitioning was ‘realized that my gender dysphoria was related to other issues’ (70%). The second one was ‘health concerns’ (62%), followed by ‘transition did not help my dysphoria’ (50%), ‘found alternatives to deal with my dysphoria’ (45%).”
“Forty-five percent of the whole sample reported not feeling properly informed about the health implications of the accessed treatments and interventions before undergoing them.”
Detransitioners have ongoing medical needs. We believe there should be a provision in the bill for coverage for all types of detransition-related healthcare, such as psychotherapy to work through the transition regret and any unresolved mental health issues that may have led them to transition. There should also be coverage for cosmetic procedures such as laser hair removal to reverse some of the permanent effects of testosterone. It is the responsibility of the province to provide all necessary supports to these individuals who've been neglected and forgotten by our healthcare system.
Conclusion
History is full of examples of the medical world making mistakes. Lobotomies were once considered an appropriate treatment for people suffering from mental illness, and recovered-memory therapy, at one time popular, has now been thoroughly discredited. In both instances, very real harm was done to a large number of people before the medical community realised the damage being done. We believe that we may be currently witnessing another such moment, and that teenage girls and young women comprise most of the victims. Adopting the informed consent model of gender-affirming care will only result in more damage being done to vulnerable girls and women, so we urge legislators to reconsider Bill 17 and closely consider the revised guidelines published by professional colleges in Sweden, Finland, the UK, Australia and New Zealand as examples of how best to protect this at-risk demographic.
Recommendations
1. Remove all reference to gender-affirming care in the bill, including in the name of the proposed committee, and instead commit to forming a committee dedicated to providing evidence-based care to all members of the transgender community, including detransitioners.
2. Remove reference to the risky Informed Consent Model of care.
3. Include members of the following groups in the committee: detransitioners, parents of children who were diagnosed with late-onset gender dysphoria, and members of the medical profession who support psychotherapeutic care for gender dysphoric teens.
4. Commit to establishing an independent review of the gender services provided in Ontario, with the aim of developing a better understanding of the sudden surge in young people identifying as transgender, and the rising rates of detransition.
[1] Detransition refers to the act of stopping or reversing a medical transition [2] We are using the term natal (sex) to refer to individuals’ sex at birth. It is not a reference to individuals’ gender identity or expression [3] While the Court of Appeal overturned the need for court intervention when prescribing puberty blockers, the judgment recognised “the difficulties and complexities associated with the question of whether children are competent to consent to the prescription of puberty blockers and cross-sex hormones” and stated that “it is for the clinicians to exercise their judgement knowing how important it is that consent is properly obtained according to the particular individual circumstances”.
[i] https://www.frontiersin.org/articles/10.3389/fpsyt.2021.632784/full
[ii] Zucker, K.J. Adolescents with Gender Dysphoria: Reflections on Some Contemporary Clinical and Research Issues. Archives of Sexual Behavior 48, 1983–1992 (2019)
[iii] Aitken M, Steensma TD, Blanchard R, VanderLaan DP, et al. Evidence for an altered sex ratio in clinic-referred adolescents with gender dysphoria. Journal of Sexual Medicine (2015)
[iv] Kaltiala-Heino, R., Sumia, M., Työläjärvi, M. et al. Two years of gender identity service for minors: overrepresentation of natal girls with severe problems in adolescent development. Child and Adolescent Psychiatry and Mental Health 9, 9 (2015)
[v] Butler G, De Graaf N, Wren B, et a. lAssessment and support of children and adolescents with gender dysphoria. Archives of Disease in Childhood 103:631-636 (2018)
[vi] de Vries, A.L.C., Noens, I.L.J., Cohen-Kettenis, P.T. et al. Autism Spectrum Disorders in Gender Dysphoric Children and Adolescents. Journal of Autism and Developmental Disorders 40, 930–936 (2010).
[vii] Society for Evidence-Based Gender Medicine. One Year Since Finland Broke with WPATH "Standards of Care" (2020) (unofficial translation of Finnish guidelines for treating gender-dysphoric youth)
[viii]Society for Evidence-Based Gender Medicine. All Six of Sweden's Pediatric Clinics Meet to Discuss a Cautious Stance Toward Pediatric Gender Transitions (2021) (summary of a medical news article in Sweden)
[ix] Policy Change Regarding Hormonal Treatment of Minors with Gender Dysphoria at Tema Barn - Astrid Lindgren Children’s Hospital
[x] The Independent Review of Gender Identity Services for Children and Young People (The Cass Review)
[xi] Society for Evidence-Based Gender Medicine. New Systematic Reviews of Puberty Blockers and Cross-Sex Hormones Published by NICE (March 31, 2021)
[xii] Royal Australian and New Zealand College of Psychiatrists. Recognising and addressing the mental health needs of people experiencing Gender Dysphoria / Gender Incongruence (Position statement 103). August 2021
[xiii]Biggs, Michael. "Revisiting the effect of GnRH analogue treatment on bone mineral density in young adolescents with gender dysphoria" Journal of Pediatric Endocrinology and Metabolism, vol. 34, no. 7, 2021, pp. 937-939
[xiv] Carmichael P, Butler G, Masic U, Cole TJ, De Stavola BL, Davidson S, et al. (2021) Short-term outcomes of pubertal suppression in a selected cohort of 12 to 15 year old young people with persistent gender dysphoria in the UK. PLoS ONE 16(2): e0243894
[xv] de Vries AL, Steensma TD, Doreleijers TA, Cohen-Kettenis PT. Puberty suppression in adolescents with gender identity disorder: a prospective follow-up study. The Journal of Sexual Medicine. 2011 Aug;8(8):2276-83
[xvi] Cheng PJ, Pastuszak AW, Myers JB, Goodwin IA, Hotaling JM. Fertility concerns of the transgender patient. Translational Andrology and Urology. 2019 Jun;8(3):209-218
[xvii]Baldassarre, M., et al. Effects of long-term high dose testosterone administration on vaginal epithelium structure and estrogen receptor-[alpha] and -[beta] expression of young women. International Journal of Impotence Research, vol. 25, no. 5, Sept.-Oct. 2013, pp. 172+. Gale Academic OneFile
[xviii]Bell-v-Tavistock Judgement (01/12/2020)
[xix] Johnson SB, Blum RW, Giedd JN. Adolescent maturity and the brain: the promise and pitfalls of neuroscience research in adolescent health policy. Journal of Adolescent Health. 2009;45(3):216-221
[xx] Hall, R., Mitchell, L., & Sachdeva, J. Access to care and frequency of detransition among a cohort discharged by a UK national adult gender identity clinic: Retrospective case-note review. BJPsych Open, 7(6), E184 (2021)
[xxi] Littman, L. Individuals Treated for Gender Dysphoria with Medical and/or Surgical Transition Who Subsequently Detransitioned: A Survey of 100 Detransitioners. Archives of Sexual Behavior (2021)
[xxii]Elie Vandenbussche. Detransition-Related Needs and Support: A Cross-Sectional Online Survey. Journal of Homosexuality (2021)
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